Good Ttt But Still Symptomatic?

[jangle]

My first TTT in 2011 my HR changed max 55 bpm and averaged 43 bpm from supine to tilted up. Also I failed the deep breathing cardiovagal test. (Parasympathetic dysfunction)

Now after 2 years of doing various things (this test was done off all medications for at least 4 weeks)

my HR max was 29 bpm, average 27 bpm. Also I passed the cardiovagal test (no more parasympathetic dysfunction) [With one caveat, it wasn't continuous monitoring of HR/BP, it was done at 1 min, 3 min, 5 min, and 10 min]

The thing is, symptomatically I don't really feel like I'm significantly better. But now I'm confused as to whether I still have POTS or not. One doctor at the Mayo clinic said I did, and the neurologist said I still had abnormal HR response to tilt, but she didn't call it POTS.

I'm confused?

[Carrie]

I wouldn't worry too much about the label of POTS vs. dysautonomia vs. something else. Something still feels wrong (and is wrong), even if some of your physiologic measures are considered normal.

That's one of the things about dysautonomia. Sometimes it acts up and sometimes it doesn't, which makes the diagnosis that much more difficult. Sometimes just one variable (room temperature, what your last meal was) can be that final factor in pushing you into POTS symptoms or not. Another thing I've read is that if you're a well-trained athlete your body can compensate for some of the TTT and give you a "passing" result. I don't know why this happens. But even if you give the same person a TTT ten times, you'll get somewhat different results,

So I'd stay stay persistent! There is some kind of dysautonomia present, and whether they want to call it POTS today, keep trying to look for the cause and cure. :-)

[Christy_D]

That is the same thing that happened to my son. The first TTT was done in Cleveland for 45 minutes with continuous monitoring with diagnosis of POTS, then his second TTT done two years later at the Mayo was only 10 minutes with manual monitoring at 0, 1, 5 and 10. They told us my son was getting better that he no longer had POTS, but actually after that he only continued to get worse. The doctor actually said he had POTS, he scratched out the T. I'm not real happy with the 'results' the Mayo gave us. They also proceeded to take him off all medications saying he didn't need them which caused a crash that he has never fully recovered from. Even after reinstating his medications, they don't have the same effectiveness that they had prior to stopping them.

FYI- on poor man's TTT that he has done everytime he sees his neurologist, it shows POTS. The Mayo didn't take into consideration that he may have been having a good day, stat wise.

[jangle]

Yes, I wonder if it's because the Mayo clinic tilts at 70 degrees whereas I think at Baylor they might have tilted me at 85 degrees. (More steep angle). I could be mistaken. 70 degrees might be the standard angle for TTT.

The cardiologists at Mayo wanted me off all medications, but the neurologist wanted a variety of medications, two of which were florinef and pyridostigmine. I don't think they have clinical experience with octreotide or ivabradine, but I could be mistaken. I felt like the neurologist was a lot more compassionate though and willing to try a lot of things to get me better.

[Katybug]

My POTS neuro told me early on in my tretment that the actual heart rate numbers don't correlate with symptoms and that often the numbers will show some improvement but patients do not report improvement in symptoms.

[jangle]

My POTS neuro told me early on in my tretment that the actual heart rate numbers don't correlate with symptoms and that often the numbers will show some improvement but patients do not report improvement in symptoms.

I don't think they correlate well, that's just been my subjective experience, that I can be symptomatic sitting up even though my HR won't hit 100 from just sitting (usually).

However I do think at some point it tends towards a correlation, like if your TTT has it so that your HR doesn't move at all, you probably will be feeling pretty good!

(Unless of course the HR is artificially kept low - by a BB or something like that, I mean a 'natural' TTT)

[roxie]

This is one of my fears. Every time I tell A dr I have pots &rhey want to test my hr sitting & standing I panic. It happened the other day where it didn't go up instantly.

I don't think you always can correlate it there are times when my heart is pounding but not necessarily fast and I don't feel good.

[Lemons2lemonade]

I hate to sound like a broken record, but 29 bpm? Are you in good physical shape? If i had a nickel for every time a dr. asked me that when i went into a brady phase...arguments in the E.R...my favorite thing to do! LOL

[ramakentesh]

They measure the tachycardia not because it provides a meaningful measure of how symptomatic you are, but because it is the easiest objective measurement that indicates dysfunction.

I can have massive tachy and feel great and have days where hr and Bp appear normal and I feel like crap. I don't generally bother measuring these vitals as they are not indicative of how well or otherwise I feel.

the only doctor that I am aware of that tried to suggest measures of heart rate were indicative of severity of pathology was the one trying to argue that exercise 'may cure' pots.

[Dizzysillyak]

What do you mean by symptomatic ? What symptoms are you having ?

Fwiw, my feelings of oi, low blood to the brain/petite mals usually, tachycardia and trouble breathing, match up to my pmttt. I was thinking maybe it's because I have a left bundle branch block and my heart can't keep up if I'm upright. I can't exercise because of this.

Maybe that's the difference ? Meaning if there's a chronic heart condition that always interfers with functionality pmttts will always corelate.

[jangle]

I hate to sound like a broken record, but 29 bpm? Are you in good physical shape? If i had a nickel for every time a dr. asked me that when i went into a brady phase...arguments in the E.R...my favorite thing to do! LOL

Yes, I am in good physical shape, I'm back to running miles daily + rows + stairmaster + weights.

I think some of the variation in TTT results can be because of the tilt angle, I'm fairly sure at Baylor they told me they set it at 85 degrees. They really need to standardize it.

[Chaos]

The other thing I always wonder about is that at Mayo when they do the TTT they had my arms out at 90 degrees on those arm supports. At Cleveland and locally my arms were by my sides for the TTT. It seems that factor right there would account for some of the extra HR increase as having your arms in a more dependent position would make tachycardia worse as opposed to having them out to the side. Besides, having them out to the side has never made sense to me as far as it being a functional, real-world replication of anything we experience in our daily lives.

None of my TTTs at Mayo have ever met the POTS criteria of 30 BPM increase (although I've been on meds for all of them) but they were all positive at the other locations. Whether that's because of the arm position or lower tilt angle or what, I'm not sure. My POTS neuro still calls it POTS though. Just says it's probably because of the meds or day to day variation in symptoms.

[Guest Alex]

Jangle,

at least as far as kids with POTS are concerned, it looks like some drs agree that they can 'pass' the TTT yet have POTS

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3564028/pdf/kjped-56-32.pdf

If it's any consolation - I have times when I manage to ignore my elevated HR and have a 'normal' or 'good' day, while at other times a normal set of vitals are not reflecting the crappy way I feel at all.

Also, during my first TTT I fainted - so my dr dx-ed me with neurocardiogenic syncope on top of POTS - I have never fainted before the TTT or ever since.

Alex